Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That’s me today. I woke up in tears…literally. That happens to me from time to time, only today it has hit me really hard. Harder than usual.

I hate when that happens. My emotions seem to have a mind of their own and sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with Multiple Sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional, but I know for a fact that’s not me. I talk about the struggles I face because I believe that the more the public is made aware of the things we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations, things that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up today with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I’ve had my good cry already this morning. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

About the Author

About the Author

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

Thank you for your posts. I tried to order an Uber to pick up my daughter at her apartment today, and the sheer frustration of trying to figure out this very simple application and being unable to do so had me completely break down to a puddle of mush. Me, the mother who does everything for her children, who spent years and years managing a doctor’s office… Can’t even order an Uber today.

Our lovely Penelope – this is just to let you know that I’m crying with you today, but however dark it might be now… there’ll be another Rainbow just around the corner, and we’ll laugh again! Feel hugged very closely & some more!!! 😘

Hi Penelope I could say welcome to our world but I know you know. I think the biggest thing we don’t do, like any other with problems, is we don’t talk enough. Other people don’t know what we are feeling like because we don’t tell them. This could be of hard to do as we all worry about them not ourselves. Let someone in and let them help you. Don’t be afraid to ask for help even if you don’t know what it can do.
I have help to get me showered three times a week. I thought I can do this ok without help, but I was wrong, and lucky I didn’t have any serious problems in falling over or bumping into things causing pain or worse. So I accept the help and they have been good for me and give me encouragement in what I can do, not what I can’t.
But really we need to keep on talking. People will listen as we tell them and we must listen to them as well.

I’m not too badly affected,but find pain extremely difficult to cope with. For the past ten days I’ve been trailing about with other people who are really enjoying themselves and think I am too. In reality I’m in severe pain and totally worn out! I’m heavily involved in the care of my grandchildren because schools and Nursery are on holiday. I love them so so much and try to give them an enjoyable time when they’re with me.However when I come home……? Well you can guess! Wonder what I’ll be like in another ten days? Well, think I already know the answer to that one!!!!

Praying for you. I also feel like hiding in bed sometimes but know that if I don’t push myself to get up, it’ll be worse later so my first stopping place once dressed, etc. is my cosy chair, armed with my iPad so I can start checking out my world. Lots of us know how you feel, but Kia kaha – stay strong! But don’t be afraid to rest up a bit more when you need to. ❤️

You get to a point where no matter how much you want to be heroic in front of others, you just can’t and it really doesn’t seem fair to others, to let on that it is always manageable, that you can always put on a positive face and move forward with your life. Some days are just too rough. No one has looked on the bright side more than Penelope, so if she says she just can’t pretend that all is fine there is a reason why and I would never question her point of view. It does get rough, you do feel alone, you do need help, if we people continue to try and hide these needs, it hurts the whole community and we fail as teacher’s. These people are heroes, we need to celebrate their strength and be there for them in any way when we can, even if it is just to send a note saying that we are thinking of them. It takes so little and means so much. Hats off to you Penelope you are a great educator.

hi if they are very young they dont need a lot of info.too much and they might interpt the info in wrong way.thinking she might die etc.she knows her children better then you,im sure you are a loving kind granma but respecting her wishes is best and its something she has controll over.she has lost controll over this terrible condition and this is a way for her to not feel powerless.🤗😇

I feel sorry for the people who feel this way. Nothing wrong with going on each day without expressing problems.My son has M.S. and a positive attitude and copes with problems every day. I think it only makes a person feel worse if you dwell on it too much. I don’t have M.S. but live in chronic pain every day. I keep positive as well. We both are happy people &dwell on what we can do, not what we can’t. Hope this helps some to feel better.

HUGS your way Penelope because I’am a person who does hide her MS well unless the family can visually see me having a problem they just don’t know because I’m the one who will not share. BUT THANK YOU Penelope I’am learning to share 🙂 its NOT easy. I’m a slow learner and your a great teacher so a big hug your your way today and thanks for teaching me to share about my MS!!!!!

I was going through the same thing off an on for years. It may sound silly but I got a service dog and then two rescues. Now they not only help me but I helped them. They give me a reason to fight back against thoses days and joy in knowing I have them to wake up to each day. We have become a team,an now I wouldn’t know what to do without them. I push myself to be active to care for them. An the unconditional love they give in return is priceless. I’m no longer alone in the fight,an I look forward to many years together!

I have a shelter dog now, absolutely lovable. Had SPCA dogs before. You’re talking to a person who was deathly afraid of dogs! Now I wouldn’t be without one. Some days I think animals are more understanding than people! Much happiness and good times for you and your friend!

Ditto here, can’t get Dr’s to listen and test for ms or anything mind you..especially no job, no insurance..so, today 7am I got up feeling blah, got up had cup of coffee, went to feed dogs then boom, tremors start, body aches everywhere, and all muscles are tight, I can’t speak at all but baby talk, and can not walk…I can’t lift me legs onto the bed, hard to get a drink with hands scrunched up..etc…this happens at least twice a week, I will be in wheelchair rest of day due to legs not working..if I make any sudden movements I start tremoring all over..yesterday I was outside doing yard work and running errands..No medicine to help, Dr’s don’t know what’s going on..keep saying anxiety, I’m 46, I know my body and that’s not it, maybe part but…no..sorry I just blah,blahed on you..just so frustrating..don’t know what to do, where to go, how to get Dr’s to listen,, argh, I do thank the GOD Lord for being strong enough to not give up, but to be honest, I’ve become a crier with all this..

Already contacted them, checked out resource they sent me, no one can help til I get confirmation of ms..I’ve already saw two neurologist, woo couldn’t figure out what’s going on..mri shots white spots in brain, spinal tap was a disaster, Dr’s told me they thought I was gonna die during procedure..guess I got saddle block?! Been to several Dr’s here, none of them could figure it out, therapist I tried got scared when I had an episode in her office, tremors and all..so without warning she passed me along to another therapist further away..I really don’t think nw Arkansas area even believes in ms..I have literally left one Dr’s office barely able to walk and all the dr said, bye see ya next visit..we asked why can’t I walk or talk right? Well I don’t know what’s causing this, you’ll need to see someone else for that

im so so sorry .can you go to ER?? someone calm and strong needs to go with you so you cant be fobbed off.i live in ireland and i can only urge you not to give up.your quality of life is just not acceptable please do not accept this.i will be with you in spirit.please go and dont leave till you have answers.doctors take an oath to promise to help all while they are at work .you matter please believe this🤗🤗😇😇

Oh yes, thank you..I have tried every hospital in this area and a couple more..they can’t figure it putt, keep saying I have fake seizures, pseudo seizures that’s caused by stress..they give me that diagnosis only because they can’t figure it out..I’ve had several Dr’s tell me they don’t know what’s wrong..last time in er, was there six hrs, they took blood then said well we can’t find anything wrong, can’t help you sorry..here try some anxiety medicine..without money nor insurance you will not get quality help here..trying for disability but who knows

Elaine Bell prayers for you in the name of Jesus🙏✨I’ve had MS for 37years diagnosed in 1980. I recommend seeing another Neurologist. When your doctor does not believe your symptoms, it is very frustrating and adds more stress. I am 70years old now..,my doctor is Dr. Kendrick Henderson in Cordova-Memphis area. He is in MS research and has been good to me. He took the place of my neurologist that diagnosed me. He died 4 years ago. MS is already bad enough without having people who are supposed to help but don’t take the time. I am on Medicare and he takes that, Thank God! There is no cure and when I was diagnosed…,was told, “cure in 5yrs” I’m still waiting 37yrs later. We are God’s children and His promise that he will not leave nor forsake me is what I hold too.

Amen, and He hasn’t, He definitely is my strength..I’m supposed too see a third neurologist soon as paperwork clears..it’s more frustrating that friends leave you because your” sick” as job’s friends said. Must of done something wrong to have this disease..even bf getting frustrated that I’m broken..I definitely feel alone…I thank God everyday because as you said, He will never leave us not forsake us..

I hate that you’re feeling overwhelmed today. I love that you express just the way I feel at times. Unfortunately, it reassures me that I’m not crazy and others have the same feelings and/or experiences. I hope your day perks up. Have a good one!

Oh Penelope, thank you for putting in words my feelings today, yesterday and last week. Today I decided to just stay home and take care of me because I deserve it. Thank you for your words, God Bless you!!!!!

I’m so sorry you’re having one of those days. You will be in my prayers! I do thank you so much for always voicing what so many of us feel. Almost 2 years since diagnosis, my symptoms are still fairly manageable (most days), but I still have those days… I so look forward to reading your blog posts, and your twitter always makes me laugh out loud! Thank you for sharing your life with us (the good, the bad and the ugly! lol)

Just when you think you’re doing okay, another day dawns and you can’t feel your leg – feels like a 100-lb. sand bag dragging you down; you’re dizzy, can’t think straight, can’t even follow a simple recipe. Deep down I know I’ll have better days; I only wish they were more predictable.

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About Positive Living with MS

Positive Living with MS was started by Penelope Conway who was diagnosed with MS in 2013. She found few resources for positive encouragement; to laugh, cry, share, and just feel normal in the midst of a life of chaos; so she decided to start something herself. Positive Living with MS was birthed out of Penelope’s desire to show others that regardless of the challenge, we can all enjoy life to the fullest and find a smile in the storm.